" Living positively with dementia doesn’t mean denying the pain and grief. For me it’s summed up in this quote: Life isn’t about how to survive the storm, but how to dance in the rain. "
A carer’s perspective on living positively with dementia

Jenny Fitzpatrick spoke at the recent Living Positively with Dementia forum in Wollongong about her caring experience with her husband, Noel. Here is her presentation.

A Carer Perspective on Living Positively with Dementia

I am Jenny Fitzpatrick. I am married to Noel Hackett, a most extraordinary man, an exquisite human being and the love of my life, who was diagnosed with Younger Onset Dementia – Alzheimer’s disease – on 23 January 2009. He had just turned 59.

Alzheimer’s disease is an incurable, terminal illness – as you all well know.

To be positive requires RESILIENCE.

I think of resilience as bouncing back. It is not about not being knocked down, but about getting back up again and again and then again.

Living positively with dementia doesn’t mean denying the pain and grief. For me it’s summed up in this quote:

Life isn’t about how to survive the storm,

but how to dance in the rain.

So today I am going to talk about how Noel and I “dance in the rain”: how we keep connected, engaged and live in the present.

Every journey is unique. Noel’s experience of Alzheimer’s and my experience as a carer are our journey. All I can do today is share what we do, how we live…

However, I do believe in the power of story and I know that other people’s stories have inspired me and hopefully something of what I say today will resonate with you.

Not long after the actual diagnosis, Noel said:

“Everyone has something in their lives to contend with.

This is ours and we will accept it with grace.”

I was stunned and knew in that moment that I needed to step up and face this disease with the “grace” with which he was facing it. It is a journey we are making together.

One evening, after a heart-to-heart that morning, I found a note from Noel:

Jenny

A Thought

As my disease takes over

I will depend on you more…

And that will mean

My capacity for dependence

Will increase

And my capacity for

Unselfish love may

Wither away.

Noel

That time creeps in imperceptibly! Our lives and relationship have changed profoundly!

Being a carer is not something I chose, just as Noel did not choose his disease! However, I believe there comes a time when one needs to embrace it as a new way of life. For me, that has emerged gradually…

Some call Alzheimer’s disease: the Long Goodbye. There is a lot of truth in that, as the losses are ongoing – it is a one-way street! It is not, however the full story. The challenge is to live with Alzheimer’s and the constant unremitting decline it inflicts.

I have developed 8 guiding principles and I thought I would frame my presentation about us in the context of those.

They are not in order of importance nor difficulty! And they do overlap!

1. Learn about Dementia.

We decided we needed to learn to live with the disease.

I wanted to participate in the Living with Memory Loss Course 9offered through Alzheimer’s Australia) for Younger Onset Dementia people. Some people were critical of us being so involved so quickly – they were struggling with the reality and couldn’t really see much decline.

Noel is more of an introvert and he was happy to read about Alzheimer’s and did do that, but I needed to talk, to listen, to learn, to be among people who might understand. Noel was willing to come along for me. We began the program five weeks after diagnosis. That was a great decision!

We are still participating in the monthly Support Group. It is empowering. The other members speak our language! They just get it! People share their experiences and I learn so much from them. What seemed so confronting and frightening becomes manageable and expected.

“If they can do it, so can I!”

When I am feeling sorry for myself or overwhelmed I tell myself that over and over again. “If so and so can do it, so can I!”

Alzheimer’s Australia NSW has opened up many opportunities for further education:

  • talks at Parliament House and the University of NSW
  • information about research and conferences
  • information about services and research projects
  • the Helpline
  • Help Sheets
  • The Library – I visit regularly
  • counselling
  • the wisdom and expertise of the staff.

Another part of learning about dementia has been working with Noel’s GP Dr John who has a balanced view of life and a great sense of humour. I have absorbed some of his attitudes.

Every appointment has been filled with laughter and we leave feeling lighter – he has journeyed with us with wisdom and openness, with care and professionalism and with a great knowledge of Alzheimer’s and an ability to listen.

2. Be engaged! Be active! Get out! Get connected!

In 2009 I was working full-time and Noel was able to relax a little after finishing work and being free of the struggles he had been experiencing.

We contacted some friends and asked if Noel could volunteer to do odd jobs and gardening for them. Some embraced the opportunity and were willing to provide the support needed to enable Noel to complete tasks like, mowing, weeding, cutting hedges, fixing things around the home, some painting, carting rubbish out onto the street for Council Clean-Up etc. Others after just one experience simply didn’t follow-up with us. With the people with whom it did work, Noel continued this practice for nearly three years travelling by train to Gerringong and Hazelbrook in the Blue Mountains on a regular basis.

He felt valued and knew that often he was doing things that the people he was helping were unable to manage by themselves. He felt a sense of worth.

During those early years, he did a lot of reading – complex theology books and books about evolution and history. He was fascinated and highly engaged.

He entertained himself with taking up the guitar again. He played golf with a friend until he was no longer able to drive (he surrendered his licence in November 2009) so that petered out.

He used to meet a mate in the city and do city and harbour walks. He’d meet another mate for lunch. But these too petered out.

He used to go bike-riding with my sister Viv. Often he packed a lunch and would go out by himself – we live near the Cooks River Cycle track. His knees were giving him some trouble so we invested in an electric bike, which can be used as an ordinary bike or as a battery-powered bike. That gave him an extraordinary new lease of life – a fantastic investment!

With careful planning and generous support of friends Noel participated in outings organised by Alzheimer’s NSW to Cockatoo Island and the Buddhist Temple at Berkley.

Noel used to support my sister Chris, on her weekly visits to my Dad who could be difficult, but Noel always managed to keep him calm, so for more than a year, Noel was visiting my Dad at Camden twice each week: with Chris and with me. Again he felt as if he could make a real contribution! Dad loved Noel. One of Dad’s famous lines was:

The best thing about Jenny is Noel!!!

As time went on, Noel felt he needed more company (other people his age were still working). He participated in the ELLA Centre bus outings for Younger Onset but soon became depressed as the outings were limited. Noel needed more physical activity and engagement. Rather than just let it go, I wanted to reassure the Director that we were not being critical of the outings, it was just that they were not meeting Noel’s needs. To Alison’s credit, she really listened… and included Noel in the Government funding application for one-on-one programs. Nine months later Noel began to receive one-on-one support where he had a say in what they would do.

The first carer was a young man who was a graphic artist. They walked, sketched and painted. Noel loved it. The carers have changed and so have the style of outings. Kim is a local man, who is interested in the developments in the local area. Together they supervised the building of the Light Rail extension to Dulwich Hill and were among the first to ride the Light Rail.

Noel enjoyed Men’s Shed for a while. The leaders were very welcoming and wanted to be accommodating. He liked being with a group of men. However, being unable to take initiative and unable to follow even the most basic instructions, he soon gave it up. The coordinators were horrified that he had been unhappy and tried to talk him into going back with more support but Noel had moved on.

I think it would have worked if Noel had had a carer working alongside him like he does in the Cook’s River Environmental Group. Kim accompanies him to the Salt Marsh where they weed and plant. Noel feels very strongly about the environment and initiated this himself. He really enjoys this.

We have tried to be honest, open and flexible in our pursuit of meaningful engagement.

3. As a carer: Empathise! Imagine! Just be there!

Imagine what it is like to live with Alzheimer’s as it imperceptibly invades and erodes your memories, skills, abilities, language and therefore your sense of who you are!

Empathise! Just be there…

Noel is a reflective person who has had deep insight into his disease. He has always been able to tell me about his experience and I have read about what it’s like to have dementia.

He was invited to write about his experience of dementia for the CAPA Quarterly Magazine (Counsellors and Psychotherapists Association). I interviewed him in mid 2012 and the editor pulled it together being faithful to his words. It’s called: Sinking into the Darkness of Dementia. You can read it on the Dementia Daily website.

Noel says things like:

Alzheimer’s cuts me out of many aspects of life like dialogue. I sit on the edge of conversations, finding it very difficult to join in and keep up.

Imagine what that’s like for an intelligent, well-read, thoughtful person!

Noel has spoken about giving up work as being destructive of his purposefulness, his social status and his ability to contribute financially.

He says: Loss of memory feels like a disintegration of the self. He feels intense aloneness.

He feels disturbed about being dependent and worries about the load I have to carry saying: “She has a lot of responsibilities, just ordinary everyday things, but she has to do them all.”

When speaking to the new younger Onset Dementia Key Workers on the first day of their orientation last year he pointed to this picture on the wall and said: “That is what it is like having Alzheimer’s.” Take a moment to let it speak to you of his experience.

He feels trapped and feeling his way through life… having no idea where he is headed… what is in front of him….

I am sensitive to what Noel says and more recently to how he behaves. I absorb what I read and try to create a lifestyle that respects and supports Noel’s ever-changing needs as he lives with this sad and dehumanising disease.

4. Accept change as a constant…

I read this quote by Jan Glidewell recently in Chicken Soup for the Soul, Living with Alzheimer’s and Other Dementias.

“You can clutch the past so tightly to your chest that it leaves your arms too full to embrace the present.”

The ways we have been living with Alzheimer’s have changed over time and will continue to….

I am good at anticipating his needs but I have tried to hold back and respond rather than rob him of his independence. Hence I have had to manage his early morning walks, which I challenged when he was missing at 3am!

Noel said: “A man has a right to go out for a walk!”

and I fired back: “And a woman has a right to know where her husband is at 3 o’clock in the morning.”

At that we both burst out laughing and agreed on some common ground: walking only when it’s light! (Of course there comes a time when agreements too are forgotten.)

We have been able to continue many of the same involvements by modifying the support structures as required. It is a balancing act. It requires a level of risk, but this works for us.

Of course life outside us changes constantly as well. My Dad died in October 2011. My sister, Viv was diagnosed with breast cancer in December 2011.

For us, two sources of support were gone. Visiting Dad with Chris and cycling with Viv. Chris actually changed her workdays to spend Mondays with Noel as I was working Monday to Wednesday at that stage.

Dementia Support Services responded to our sudden change in circumstances and Noel has been cycling with Geoff every Tuesday since. (It rarely rains on Tuesday morning!).

Cycling has involved risk and modifications as Noel’s ability to cross roads, cycle on the left side of the bike path and follow instructions has declined. Geoff has been awesome in his willingness to work with us openly and honestly and with a level of risk to keep Noel cycling.

In April 2012, I retired and we have been able to spend a lot of time together doing the things we love and just being together.

At the end of last year Noel decided to attend the ELLA Centre Younger Onset Dementia program every Wednesday. When the coordinator saw that Noel was really struggling she offered us another 4 hours of one-on-one support, which has been wonderful for both of us, as Noel needs to be actively engaged for a good part of each day and can’t be by himself at all these days.

5. Accept help and invitations… Take up opportunities!Be OPEN!

We have been invited to participate in various research projects and always say YES to every opportunity that comes our way:

  • One was the TAP research: Tailored Activity Project where we worked with an occupational therapist to develop activities tailored to Noel’s interests and skills.

Noel took up photography again using a simple point and shoot camera.

Another of the activities – watching DVDs of concerts of some of his favourite artists, eg Leonard Cohen and The Corrs, brought us both many hours of joy and relaxation.

  • Noel has made a commitment to donate his brain for research as a consequence of his 6-year participation in Prince of Wales Mind Research Institute.
  •  We were involved in filming a series of video clips called You’re Not Alone Discussing Dementia with Alzheimer’s Australia NSW.
  •  Noel has been involved in dramatherapy and art appreciation at the Museum of Contemporary Art.

We have made new friends through the

  • Inner West Men’s Discussion group
  • the Younger Onset Dementia Café and
  • Tai-Chi at North Ryde

Accepting invitations from family and friends who are willing to journey with us, has been life-giving as well. We do as many real and ordinary things as possible.

We have been sailing on my sister’s yacht Noel has been cycling, kayaking, snorkelling, swimming, surfing, bush walking and gardening with friends. He has been on a couple of boys’ overnight excursions as well.

Friends from Melbourne and Brisbane as well as locals catch up with us. Some fly in just for the day to be with Noel. We have fortnightly Monday night dinners with Anthony and Louise, and go to my sister’s place frequently on a Tuesday or Wednesday evening.

Noel wanted to continue to vacuum. Anthony volunteered to enable him to do that. Noel was so pleased to do something to help me, to do something meaningful and worthwhile. He had a sense of accomplishment and I loved it!

6. Learn about ourselves.

Noel’s desire to reflect on what is happening for him and to him led him to seek some counseling/spiritual direction. He found these sessions worthwhile – he couldn’t remember what they talked about, but each time he experienced a renewed energy about life and living.

As his ability to travel independently faded I drove Noel and he invited me to participate in the sessions – an unexpected honour and an act of profound trust.

When Noel was struggling with depression and suicidal ideation at the end of last year – he decided to see a psychologist whom he had known through Alzheimer’s. Once again I was invited into his sessions and we were able to reflect, ponder and struggle together to create meaning and purpose in the midst of his declining…

Journeying with Alzheimer’s challenges me to reflect on myself too.

I am a very organised person, which is wonderful for creating the routines, which frame our lives and give Noel the security and predictability he needs. It is not so helpful in handling the chaos, which is so much part of our lives. Eg going to the beach – beach bag backed the night before, on the lounge ready to go. Arrive at the beach – no swimmers! Noel had rummaged and repacked. At least he had put his swimmers on – but alas no undies after swimming. It’s so annoying, but Noel had always done all the packing!!!

It’s so much easier if I just do things but that is not what’s best for Noel. I resist that. “What about me!” I scream to myself.

Never disagree with someone with Alzheimer’s! “What about me!” I scream to myself.

We shower in the morning. Noel can’t wait once he’s ready so now I shower in the evening. “What about me!” I scream to myself.

It is no longer a two-way street.

It is easy for me to become resentful over the little things!

I am learning to be gentle with myself!

Alzheimer’s is my journey too! I accept that Noel becomes frustrated and I am learning that is natural for me to become frustrated too. If I accept it in Noel then I need in turn to accept it non-judgementally in myself and just be gentle and forgiving of myself.

I also have been receiving counselling.

And I too am on a profound spiritual journey…..

My code is:

Be open! Don’t get locked into my/our world.

Being open includes learning to forgive people who have let us down – forgive and let go of my anger towards them. That is an ongoing challenge for me!

(Recently I read that only 1 in 5 are genetically predisposed to feeling empathy. That has actually softened me… somewhat…)

Being open has gifted me with people, stories and lives that I hold precious.

  • People – ordinary people living extraordinary lives
  • people who inspire me with their courage and sense of humour…
  • people who show me what is possible…
  • people who keep me positive!
  • And of course my beautiful husband NOEL whose profound inner strength and amazing sense of his self-worth inspire me.

I read this quote by Alan Alda recently, again it’s from the Chicken Soup book:

“You have to leave the city of your comfort and go into the wilderness of your intuition. What you’ll discover will be wonderful. What you’ll discover is yourself.”

That is true for me. I am very different to the person I thought I was. I am much calmer and more capable. I am more confident and courageous than I ever imagined.

I am working on it though… each day…

Noel and I have been honest and open about Alzheimer’s and its impact on both of us. We were organised early with legal matters and later with Advance Care Planning.

7. Care for myself.

This is really a sub-section of learning about ourselves. We hear it all the time… but gradually I have come to understand that it is essential! If I’m not OK, I can’t create the calm, peaceful and loving environment that is essential for Noel. He is vulnerable!

Since Noel’s recent decline, he still manages to make clear that he needs me to be okay. I was upset one day and he held my shoulders and said: “Calm inside! Calm inside!”

Some of the ways I care for myself are:

  • Going to the gym three times a week
  • Walking
  • Having a quiet read with a good coffee
  • Coffee or lunch with my sisters and friends
  • Reading

(Reading for pleasure; reading about inspiring people; reading about Alzheimer’s; reading about being a carer and more recently reading about grieving)

  • Counselling through Alzheimer’s Australia NSW
  • Talking and reflecting
  • Meditating and reflecting
  • Giving back to Alzheimer’s Australia through opportunities like today

8. Keep laughing!

I know I have mentioned it several time already but it is so important for us.

Being a carer is calling forth the very best in me and some days I do a good job but everyday I love Noel more!

Since being invited to present at this day Noel experienced a sudden decline. He has spent three weeks in a secure Psycho-Geriatric ward in hospital. From there he moved into permanent residential care, where he is under the same doctor as he was when he was in hospital.

It is devastatingly sad and no amount of preparation has prepared me!

However, I am so proud of the way we have lived with Alzheimer’s to date. The Sunday before Noel was admitted to hospital we spent the evening at Sydney Vivid. We did it in an Alzheimer’s friendly way, but we were out there doing real stuff in the real world with people who love and support us…

I know we have lived well – I have no regrets and I am gifted with no guilt – just pain and loss and grief….

I ask myself and you Mary Oliver’s question from her poem: The Summer Day:

“Tell me what it is you plan to do

With your one wild and precious life?”

Find ways to dance in the rain!                 

 Posted: July 31st, 2014
Discussion

Alison Easton said:

Thank you Jenny for saying that I listened to Noel and you and responded as best I could with the limited resources we had available at the Ella Centre. Gaining money for programs for those living with younger onset dementia was extremely difficult and the inner west community itself was responsible for a great deal of the funds through the Ella's annual fundraising dinner. I spent the final eight years of my working life fighting to improve the lives of people living with YODs and their carers and hope that the work I undertook has resulted in greater recognition of the unique support needs of this group of very special people.

AniMae said:

Bless You Jenny, you are a tower of strength & inspiration! Thanx to Rose Becke for posting this on Care2 & therefore giving me access to it. Jenny i will share your words of wisdom with my dear uncle Nick (in his 80's) who is caring for dearest Aunty Terri. Love, Peace & Light to you Jenny & Noel

Liz said:

Thank you so much for your generosity in sharing your and Noel's story Jenny. I will be sharing this with our carers group later this week and can only imagine the gift that your words will be to their spirits. You and Noel are blessed to have each other. As an aside: my favourite quote I share with my husband is "I love you just the way I am!"

karen said:

Jenny thank you for your thoughts, I have sadly just started my journey with my husband with early onset dementia. He was diagnosed in March though I suspect on reflection he had the disease for so many years before diagnosis. He was a brilliant kind and caring doctor it is an awful disease that is indiscriminate with those it targets

Donna said:

Hi Jenny, Thank you so much for your valued and inspiring reflection on caring for your husband Noel. My thoughts are with you both.

Jenny said:

Hi Jenny, your story brought me to tears, such a wonderful partnership with so much love and understanding for each other. Thank you for sharing your intimate relationship and your coping strategies with this horrid disease. I have a father-in-law with severe Dementia. His two sons were in denial about their father's condition for years until his health nearly failed him. Recently my husband and I brought him home so I can care for him full time. He's had people yell in his ear because they thought he was deaf, he's had a Geriatric Assessor get frustrated and annoyed at him because he didn't understand what the assessor was asking him to do, he's had to cope with rude nursing staff who thought he was an arrogant old man. I find it most frustrating trying to explain the why and how. To properly manage a dementia patient and care for their needs, I feel, you really need to know the true spirit and mind of the patient before the dementi disease.

Pam said:

Jenny, you are a true inspiration. As one who has seen your caring and beautiful interactions with Noel, I can only wish you peace and good health on this next part of your journey.

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